• chalz1

    Member
    July 8, 2023 at 7:18 pm

    I started taking Ofev about 4 weeks ago. So far, I have not experienced any side effects. I am 65 and pretty active & healthy, besides early stages IPF😡  I take as directed with protein and lots of water. I have started to add dairy to see my tolerance and so far no problem. I try to keep my portion on the smaller side. Please fell free to reach out to me if you have any questions.

    • Packman

      Member
      March 27, 2024 at 1:10 pm

      I’ve been on OFEV for nearly three years now. My pulmonary function numbers are holding up well with little decline. I recently started having daily diarrhea and considered changing to Esbriet. However after reading someone’s advice on this forum, I started taking a 2 mg tablet of Imodium with my 150 mg OFEV. That did the trick. No more diarrhea at all. That is huge for me as I was pretty much confined to the bathroom for over a month. I take both in the middle of my meals now with no consideration to what I’m eating. I hope it works for others. It seems so obvious I’m embarrassed that I didn’t think of it and tried it sooner.

  • ette

    Member
    July 10, 2023 at 9:21 am

    For me, it was within an hour of the first pill. Nausea and vomiting.

    • Barbara Pantaleo

      Member
      August 1, 2023 at 9:56 pm

      Ette, that was a very fast response time. I have been taking OFEV for almost 2 months now and yes I have loose bowels at times but not always. This by no means stops me for being fairly active and I have always had enough notice to get to the washroom safely. I have had no other side effect but prepared if I do also because of reading up on Ofev.

      Ette, are you still taking OFEV or did you stop?

      Barbara

  • abitothat

    Member
    July 11, 2023 at 2:16 pm

    Hello! I started in October 2022, 150 mg/twice per day. I expected GI problems but never had them, however, Ofev affected my liver functions, I got high blood pressure – never had it before – and after a month I became so exhausted I had to stop taking it for a few days. When I started up the exhaustion began to build again and I have to stop again to control it as well as liver function problems. I am now on 100 mg/twice per day and I’m on blood pressure meds. Liver function is fine and I am tested monthly. Occasionally I am exhausted and I stop for a couple days to get back to normal. I think it makes me generally more tired than I would be without it but it is a trade-off I make to protect my lungs. Scarring has not gotten worse.
    Best of luck, Nancy

    • temple-mayo

      Member
      August 1, 2023 at 3:42 pm

      Hi Nancy.  Below, I said I had not had any side effects.  But, I was very tired and my BP problem, which was controlled, got worse.  Plus, headache that I attribute to the high BP.  So, my doc said to go off of it for 15 days.  I have been off for one whole day and feel much better.  My concern is that, currently, I am only taking 100 mg once a day.  The purpose was to see how my system reacted. If I am to increase the dosage to twice a day and maybe go to 150 mg, I’m not sure how I will control BP and the exhaustion.  All part of the rich experience I guess.

  • terrig

    Member
    July 11, 2023 at 5:04 pm

    Do you all work full-time, or are you retired? I work full-time and am concerned about if I’ll be able to continue working once I go on Ofev. Right now, I’m waiting for my insurance company to approve it. They denied it, but my doctor appealed. I wonder why some people have side effects and others don’t. So interesting!

    • temple-mayo

      Member
      August 1, 2023 at 3:46 pm

      Hi Terri.  I retired at the end of ’21, so I am on Medicare.  I can’t imagine your insurance company standing by their denial once your doc gives them appropriate paperwork.  You also may be able to taker advantage of the pharmaceutical company’s program for payment.  Only folks who have private insurance can qualify.  Good luck!

      • terrig

        Member
        August 8, 2023 at 3:10 pm

        Thanks, Temple. My insurance company did finally approve Ofev, and I started it on August 5. So far, no side effects, which is a huge relief. My copay is only $85/month, which is quite manageable for me, so I haven’t applied for any financial assistance.

  • jerry-fussell

    Member
    July 11, 2023 at 5:59 pm

    I lost 30lbs over the first 3 months after starting Ofev mainly from the dairy content in my diet. Actually losing the weight was a benefit for me because I had been trying to lose weight. Organ functions remained in the normal range. Between Ofev and my age(73) I found that a lot of my weight loss was in muscle mass. Since then I have started an exercising to regain the muscle. So, between diet adjustment and exercise I am living a fairly normal life.

  • ron-l

    Member
    July 11, 2023 at 7:54 pm

    Ofev was almost immediate Diarrhea. Even using OTC meds like Immodium was no help, but I tried to stick it out. I reduced the dose to 100 but that was no help.  Eventually I stopped taking it.  I walk often, which seems to be the best help I’ve found… Good Luck,

  • jjn3

    Member
    July 11, 2023 at 10:22 pm

    For me it was about a week. Had severe stomach cramps and loose bowel movements. Became dehydrated with a drop in BP and spent a few days in the hospital.

    My pulmonologist reduced my dosage to 100 mg twice a day last year from 150 and have done better. The side effects have lessened in severity but are still present. Drinking lots of water helps with the stomach cramps.

    I hope this info helps.

  • raymond-white

    Member
    July 12, 2023 at 10:02 am

    I started Ofev on 1 June. 150mg morning and night. Almost completely free of side-effects. I experienced minor weight loss, 1½ kg over the first 5 days, which I didn’t mind but did get my case manager a little excited. Had the second of a series of blood tests to check liver enzymes on 2 July,  the first being immediately before I started Ofev to set a baseline, and the results were normal.

    It looks like I have been given a free pass which is not what I was expecting. I never changed dietary habits in anticipation of GI problems. I simply did a lot of reading and prepared myself to tackle issues as they occurred. My first supply of Ofev even came with a packet of Immodium which is still unopened. Every day is a new day but after 6 weeks I am beginning to think that I may be one of the lucky ones.

    • temple-mayo

      Member
      July 30, 2023 at 2:32 pm

      Thank all for their responses.  So far, no side effects I can attribute to Ofev.  I am getting muscle burning and some cramping on ocassion and some fatigue, but that could be BP meds or the IPF.

       

  • harold-cheatham

    Member
    August 4, 2023 at 4:42 pm

    Male age 74. Diagnosed 4 years ago mild PF and mild emphysema. Covid hit and I was afraid to see a doctor. 2 years later got vaccinated and started OFEV. 2 X 150 mg per day. Initially was pretty rough. I had to figure out what worked for me. No dairy or Mexican food. Discovered Immodium and began taking 1/2 most days or a whole one if needed. Liver function OK. I get up around 9 to 10 and do not leave the house any earlier than 2 PM to avoid any unpleasant surprises. Most of this occurs in late morning to mid afternoon. My condition has been stable until the past 6 weeks or so. Now my oxygen level plummets to 86 if I walk up a single flight of stairs. I am using BOOST oxygen 95% in a can that I always keep handy. I use it before and after I go up a flight of stairs. It helps to reduce huffing and puffing. As I type this I am at 92% on my oximeter but if I were to go outside and walk around the yard fo 5 minutes I would be in distress and require my BOOST. Hope this helps!

  • terrig

    Member
    August 8, 2023 at 3:02 pm

    I finally started Ofev and am on day four. So far, no side effects. Based on the advice I read and heard beforehand, I have increased my protein intake, and I take my tablet halfway through my breakfast and dinner. I have reduced my dairy intake.

  • myrnam

    Member
    August 10, 2023 at 11:44 am

    Hi

    My husband had been on OFEV since the end of May. He just started to experience  diarrhea.

    Imodium has really not helped. He is eating bananas, rice and whatever else to alleviate his symptoms.

    What else is anyone doing out there to help with us this side effect?

    Thanks

  • paul-polidano

    Member
    August 10, 2023 at 7:38 pm

    Hi – To all who have reported that taking Imodium for diarrhea control hasn’t worked, may I suggest that you should check that you are not fructose intolerant, as this also leads to diarrhea if you don’t watch what you eat.

    I too have been on OFEV for quite some time with the usual bouts of diarrhea and nausea, but since discovering that I am fructose intolerant, my quality of life has improved a great deal by simply watching what I eat and using Imodium, with great success, I might add (-so much so that I always carry 2 caplets in my wallet for use when not at home).

    Good health to all

    PaulP -down under (OZ)

  • Glaca

    Member
    March 15, 2024 at 12:29 pm

    <font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Witam wszystkich. </font><font style=”vertical-align: inherit;”>Je</font></font>

    <font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Oddzielny czas czułem się cor</font></font>

    Tylko ten ogromnie dokuczliwe napady kaszlu, które doprowadzały do ogromnego bólu w klatce piersiowej i mięśniach tułowia.

    Na własną odpowiedzialność za zgodą lekarza prowadzącego zacząłem zażywać salicylan choliny w tabletkach do ssania (bez cukru). Na dobę nawet 8 do 10 tabletek. Po 2 tygodniach kaszel ustał. Jedyny skutek uboczny to silny wzrost wyników analiz wątrobowych. Ale po 2 tygodniach wróciło wszystko do normy.

    Obecnie sporadycznie kaszel 0.5 minut raz na kilka dni.

    Mam 72 lata. Organizm wyniszczony ciężką pracą. A teraz wiem, że jeszcze pożyję. Jem wszystko. OFEV mi służy. Wierzę w to. Pozdrawiam

  • Glaca

    Member
    March 16, 2024 at 7:40 am

    Sorry I’m writing with Google Translator, but I’m from Poland and my English is poor. Since February 2023, due to IPF, I have been on OFEV (2×150mg). After more than a year without side effects, I started having problems. Long-lasting diarrhea. No medications helped. Probiotics in significant doses for a short period of time. And what? I started eating quite large portions of boiled potatoes in lightly salted water. Additionally, lean meat stewed in vegetables and salads with carrots or green peas. After a week of this diet, everything returned to normal. I ask: has anyone tried such a diet? If so, with what effect? Greetings from Poland. – Glaca

  • Millie

    Member
    March 27, 2024 at 12:43 pm

    I WAS ON OFEV 150MG TWICE A DAY FOR 2 YEARS AND MOST OF THE TIME HAD CHRONIC DIARRHEA. IN SEPT 2023 IT GOT SO BAD WITH NAUSEA AND VOMITING THAT I TOOK A BREAK FOR 3 MONTHS. NOW THAT I’M BACK, I HAVEN’T HAD DIARRHEA AT ALL. INITIALLY, I STOPPED DRINKING MILK—-HAVE ALWAYS BEEN A BIG MILK DRINKER. HOWEVER, I CONTINUED TO EAT CHEESE. NOW, WITHOUT ANY CHEESE IN MY DIET, I’M DIARRHEA FREE. I ALSO DISCONTINUED USING HALF N HALF IN MY COFFEE/TEA. THINK ABOUT WHAT YOU’RE EATING BEFORE YOU PUT IT IN YOUR MOUTH. IT IS WONDERFUL TO BE FREE OF THE SIDE-EFFECTS. I RESTARTED IN LATE DECEMBER SO IT’S BEEN 3 MONTHS OF FEELING GOOD. OFEV NEVER MADE ME TIRED. I HAVE A LOT OF ENERGY FOR MY 84 YEARS. I DO EXERCISE EVERY DAY AND THAT IS A BIG HELP.

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